Casefinding & Follow-Up
Dolores E. McCord, RHIT, CTR
Piedmont Hospital
Atlanta, Georgia
September 30, 2004 2004 GATRA Educational Conference 2
Follow-Up and Casefinding
Inter-related ProceduresCasefinding leads to follow-up
Follow-up leads to casefinding
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Casefinding – Sources
No casefinding, no registryPathology Department – a MUST
Surgical reports– Hospital patient– Physician office – Path only
Cytology
Bone marrows
Autopsy Reports
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Casefinding – Sources
No casefinding, no registryMedical Record Indices – a MUST
Outpatient DepartmentsRadiation Therapy
Infusion Therapy / Chemotherapy
Others?
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Casefinding
Multiple sources – to findNothing
New patient, new diagnosis
Existing patient, new diagnosis, follow-up of existing diagnosis
Existing patient, existing diagnosis, recurrent or progression, follow-up
Existing patient, existing diagnosis, no change, follow-up
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Casefinding
History of, existing cases – trouble-makers
Why patient in hospital system with cancer codes?What if the biopsy was negative? What were they trying to find?
Ruling out presence of cancer?Trying to confirm presence of cancer, suspected?
What about x-rays, scans? What are they looking for?Bigger question: How far do you go?
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Follow-Up
The reason the hospital registry exists.
Finds recurrences and new primaries for existing patients
Requires resources, time, and diligence.
Provides the real value for registry: patient outcome.
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Follow-Up
Is the patient still alive?Simple question – answered,
Yes
No.
The patient is dead – end of story?ICD Cause of Death: to code or not to code. That is the question.
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Follow-Up
Is the cancer present, or was present at last contact/death?
Not so simple.Never Disease-Free Cancers: Unknown Primaries, distant metastases at diagnosis.
Can the cancer go away?Is the patient clinically without evidence of disease – per physician?
Recurrent Cancers: did treatment eradicate all cancer?
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Follow-Up
Cancer status: 1, 2, or 9?Last follow-up, cancer status: 1
Next follow-up, cancer status: 1? Any evidence for recurrence?
Questionable status – rising markers, uncertainty
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Follow-Up
Cancer status: 1, 2, or 9?Last follow-up, cancer status: 2
Next follow-up, cancer status: 2?Did treatment eradicate all evidence of cancer?
Where did it go?
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Follow-Up
Cancer status 1, 2, or 9?Last follow-up, cancer status: 9
Next follow-up, cancer status: __?
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Follow-Up
COC RequirementsPatient status
Cancer status
Recurrence information
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Follow-Up
Not Required by COCSubsequent treatment
Specific metastatic site(s)
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Follow-Up
Subsequent treatment – completes the picture
Recurrences – what happened next?
Non-analytic cases – was cancer care given?
Biopsy? More surgery? Radiation? Chemotherapy? Palliative care?
Administrative reports – radiation, 1st or 2nd course – a must!
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Follow-Up
Recurrence information – Metastatic Sites
Single site, specific code
Multiple sites, combination code – lose information
Brain mets, at DX and at recurrence – administrative reports
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Follow-Up Process
Steps = SuccessList due for follow-up
Hospital system: inpatients, outpatients, ED
MQS
SSDI
Other?
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Follow-Up Process
Steps = SuccessLetters
Physicians: one vs. all
Patients
Other physicians?
Secondary contacts?
Last resorts – the phone
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Follow-Up Letters
Patient LettersValuable information
New doctors
New address
Date of last contact – post mark date
Returned – Pain in the ____!MLNA – address search
New address
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Follow-Up Letters
Physician LettersNot always reliable
Wrong dates, unknown info
Source for other physicians
Recurrence and subsequent treatment information
Clinical trial inclusion
Keep physician contacts updated
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Follow-Up Letters
Other Contact LettersRarely used
Varied response rates
Could be useful
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Follow-Up Sources
Letters / Phone calls
Admissions / hospital service (CF)
Path reports (CF)
Clinic / outpatient visits (CF)
Internet sources
Death certificates
Obits
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Follow-Up Rates
Two MeasurementsSince reference date: 80%
Diagnosed last 5 years: 90%
No longer 80% of alive analytic patients
No longer 90% of all analytic patients
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Follow-Up Rates
Who are not followed?Non-analytic cases
CIS, CIN III, other III’s
Previously collected localized skins
Benign / borderline tumors
Foreign residents
Reportable by agreement
>100 years old, last contact >12 months
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Follow-Up RatesWho are lost?
“…delinquent if no contact has been made with the patient within fifteen months after the date of last contact.”
Hutchison, C.L., S.D. Roffers, and A.G. Fritz (eds.), Cancer registry management: principles and practice. Dubuque: Kendall/Hunt Publishing Company, 1997, p. 137.
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Follow-Up Rates
Who are lost?Last Contact: June 2003
12 months: June 2004
13 months: July 2004
14 months: August 2004
15 months: September 2004
Lost 16 months: October 2004
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Follow-Up RatesWho are lost?Current month: October 2004
12 months back: October 2003
13 months back: September 2003
14 months back: August 2003
15 months back: July 2003
16 months & lost: June 2003 & before
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Casefinding and Follow-Up
Made for each other!One should always lead to the other.
Both time-consuming processes
Both basis for registry